**Out of respect for the families who are going through or have been through childhood cancer, I want to forewarn that part of this post may be difficult to read or see. Please consider whether this post, and the posts of Adalee's story throughout September, are appropriate for you.**
September is Childhood Cancer Awareness month.
It is also when children return to school.
You probably look at this picture and don't notice that there is something missing. Our family does. This should be Addy's preschool picture - standing in front of our fireplace with brand new book bag, lunchbox, outfit, and shoes, which she would have had to pick out herself. You can almost guarantee it would be pink and sparkly, probably with mermaids. We would have her give a big smile right here in all her new gear, excited for her first day of school. I would have cried dropping her off and waited impatiently for her to come home to tell me all about her day. I can only imagine how many friends she would have made that day, that she would have loved the playground, and she would have given her teacher a run for their money!
Instead, I spent the first day of school this year on "what ifs". To be honest, I went to bed early mentally exhausted and just ready for the day to be over. In July 2017, at the age of two, Adalee was diagnosed with adrenal cortical carcinoma, an incredibly rare cancer affecting less than one in a million children each year. She was also diagnosed with Li-Fraumeni Syndrome, a genetic disorder affecting the P53 gene which suppresses tumors. A mutated P53 gene inhibits normal function allowing cells to continue to divide, resulting in cancer, usually multiple times throughout a lifetime. Addy's tumor grew through her renal (kidney) vein and into her inferior vena cava, blocking her liver and growing into her heart. It was growing rapidly.
I remember when we first got the news. I turned away from Addy's bed started to cry. I remember her sweet little voice from the bed, "I'm sorry, mama." I remember scooping her up in my arms and telling her that it wasn't her fault, that I was just sad. It was the last time I cried in front of her. I hugged her so tightly. I'd give anything for those hugs again.
Our story isn't much unlike many cancer families. We knew that something was wrong. I took her to multiple doctors and hospitals, and each time we were told it was a virus, the chicken pox, or that simply nothing was wrong. We changed pediatricians, and we found one that believed in what I was saying and took me seriously for the first time in over a month. By that time, Addy was having serious problems and we ended up in yet another hospital who sent us for more testing, where she was diagnosed at midnight that July night.
Being that adrenal cancer is so rare, odds were that this was an unusual presentation of neuroblastoma, which is what our local children's hospital believed it to be. They took a biopsy, but the cancer spilled into her abdomen. The biopsy results were inconclusive, so I began calling hospitals to find who could help. Among many others, St. Jude accepted her and had seen it, so I rode with her from Virginia to Memphis, Tennessee in an ambulance. It was there that she was diagnosed with adrenal cancer. We were devastated when they decided that surgery was not an option for her - it was too risky and there were too many spots from the spill. For adrenal cancer, surgery is the only curative option. We were experimenting with chemotherapy, which didn't show much promise in past patients without surgery, and then later she tried immunotherapy.
I remember hearing the doctor say, "We'll do everything we can to give her the best quality of life." Those words - Quality Of Life. Then she said the survival rate - 7%. From that point on, I was determined that I would know everything I could about ACC, and that I would make the most informed decision each step of the way. With help online from adults with the disease and other parents, I gained so much insight into what she was going through. I became her voice. Whatever brought a little happiness to her we found a way to make happen. Our community was so wonderful. We were blessed with so much support back home, and she was showered in items and funds to brighten her day. We were determined that she would survive this. There was a reason. There HAD to be.
Today, we have empty picture frames. Her birthdays are now memorials. Her toys and clothes are treasured items, even sleeping with her favorite ones each night. I have days where the pain is unbearable, and others that are slightly better. There is not a moment that I don't think of her or hear her little voice in my head. "Awww... so cute." Her tiny giggle. Singing her favorite songs in the car... At least three nights a week I wake up unable to breathe, a byproduct of some post-traumatic stress disorder.
You see, THIS is childhood cancer for families. It is knowing there is something wrong but being misdiagnosed with viruses. It is being asleep at 11:59 and then a cancer mom at 12:01. It is not knowing what to expect or the best course of action. It's wondering at each step along the way if you're making the right decision. It's crying in the bathroom at night when your child is sleeping and can't hear. It's being awake all night long and most of the day, only sleeping while your child sleeps, and restlessly. It is unconsciously being aware of the machines beeping, even in your sleep, and frantically rising when the rhythm is broken in the smallest way. It's sleeping in the hospital bed with your child for weeks or months at a time. It's vomiting and diarrhea, even waking with it all over you but cleaning them first. It's hearing your child cry and scream with every poke or NG tube, but knowing that it has to be done. It's wondering if they hate you or wonder what they did wrong to allow the nurses and doctors to do it. It's watching your child become less of the happy go lucky child they were before and not knowing how to help them be a child again to to see them smile.
In some families, like ours, it's a life wondering what if or why. It's having big milestones come, like the first day of school, and go without your child. It's missing them everyday. It's watching other people move on with their lives, forgetting the most painful thing that ever happened to you or not knowing how to talk to you, so they avoid you all together. It's listening to your surviving children or step children cry that they miss their sibling. It's a bittersweet feeling in every moment for the rest of your life. It's PTSD. It's learning how your significant other grieves, which is so different than yourself.
For other families, where children are "lucky" to survive, it is a lifetime of scans and worry. "Scanxiety" as the cancer families call it. It is never knowing how long you have with your child. It's combating health, cognitive, social, and other deficits from long days in the hospital and the treatments themselves. It's watching them grow up, but knowing that they could never have their own children because of the toxicity of their treatments. It's hoping that they grow up.
I can only imagine what Addy thought and felt during her treatment. At two, she said little. But, you could see it on her face. You could see it as she wasn't as bright or happy as she had been previously. I could barely cope. How could a child cope with this diagnosis, with understanding that they may die fr